As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3… Continue reading Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
Tag: PatientsLikeMe
Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN
We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe… Continue reading Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN
We’ve got a new look!
You probably already noticed, but the PatientsLikeMe blog just got a facelift. It’s all part of our ongoing effort to create a better site experience, and the feedback we’re getting from members is guiding us every step of the way. Check out all the upcoming site upgrades in Kim Goodwin’s post. Like she says, “nearly… Continue reading We’ve got a new look!
PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit. Ben was on a… Continue reading PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
Sleep survey results: infographics take-3
Happy Friday! Here’s the final round of the PatientsLikeMe sleep survey infographics. On Tuesday, we shared info about general sleep issues, and on Wednesday, we learned how these problems affect the daily lives of people living with chronic conditions. Now, see how the PatientsLikeMe community compares to a study conducted by the National Sleep Foundation… Continue reading Sleep survey results: infographics take-3
Sleep survey results: infographics take-2
As promised, here’s the next round of PatientsLikeMe sleep survey infographics. Yesterday we shared some about general sleep problems and how long they last. Today, it’s all about how sleep impacts your sex life, ability to drive a car and overall mood. Don’t forget to share through #areyousleeping on Facebook, Twitter and Pinterest so everyone can learn… Continue reading Sleep survey results: infographics take-2
Sleep survey results: infographics take-1
Just yesterday, we announced the results of the PatientsLikeMe sleep survey and found that a bad night’s sleep is the norm for people with health conditions. Over the next week, we’ll be sharing some sleep survey infographics with our blog followers and the PatientsLikeMe community. Here are a few to kick us off… PS-… Continue reading Sleep survey results: infographics take-1
Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good… Continue reading Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Patient-focused organizations join forces to build awareness and participation
The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives. Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are… Continue reading Patient-focused organizations join forces to build awareness and participation
“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn
Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn